I have been home for six days. I am amazingly lucky to be home. Unlike many others in similar circumstances I have escaped life in a nursing home. More than most people I realize just how fortunate I am. I tell myself this each and every day--it is my mantra "I am lucky to be home". This is a fact I cannot ever dismiss because if it were not for my familial support I would be rotting away in an institution. Yet at the same time I struggle with my dependence on others. I struggle knowing that I am stuck in my living room for months on end. I struggle to keep my mind active. I struggle to eat a high protein diet as ordered by the surgeon. And worst of all I struggle to be grateful for the fact I am home. Talk about being ungrateful! Here is the strange dichotomy between one's intellectual knowledge and personal feelings. I know I have no right to complain about the current state of my affairs. But my brain and heart seem to disagree.
I miss my wheelchair. I miss my desk. I miss ordinary household chores. I miss working up an appetite kayaking in the Hudson River. I miss teaching. I miss going for a drive. I miss my very boring and ordinary life. I know this sounds pathetic. I also worry if I am thinking and feeling along these lines what will I be thinking in November. I suppose I am learning the adaptation process I am going through now is more difficult than I imagined. For goodness sake the weather appears to affect my moods. On gloomy days outside my mood reflects the climate. Wow, how life has changed. Weather never influenced me like this before. I cannot help but wonder how my experience will impact my future thoughts and experiences. For one thing I am sure, each and every time I get in and out of my wheelchair I will be nothing but grateful.
10 comments:
As a therapist and practitioner of naturopathic medicine for over twenty years I'll let you in on a little secret. Mind over body is way way overrated and body controlling mind (through physiology of for example limbic system) is way underrated. Your body has gone through shock. The physical healing will go on par with the mental healing.
Eric, I appreciate your observation e.e. physical and mental healing. Frankly I am an emotional mess. I cry for seemingly no reason and have trouble controlling my emotions. I have been home a week and my frustration grows daily. As a man of action sedentary life is hard in the extreme.
It's okay to feel these things, really. It is very difficult to release stress when you're not propelling your wheelchair, cooking, cleaning, shopping, etc. The body finds it more difficult to cope with stressors, and thus--I think--more emotions because the stress hormones build. Any movement will help, as can music, laughter (want us to send some Monty Python episodes?--we have them all on DVD, 19 or so DVDs).
While homebound people don't generally get the same problems someone in the ICU gets with disorientation, there is an understudied but definite effect of being in one place.
Please be good to yourself--que sera sera. Don't judge your emotions, just be. It's easier to recover if you don't fight them but feel them as long as you need to. Indulge yourself in whatever makes you feel better--whether that's watching bad movies (my favorite indulgence), calling up friends, playing some computer games, reading badly written but entertaining novels--whatever makes you feel best. And do it as long as you need without guilt.
Hello William,
I found your blog. So sorry about the situation. I understand much... my husband is William also & he became disabled in the mid-1980's from two 18 yr.old boys crossing the center line hitting him head on in his car. In a coma for over 2 months - & everything wrong with his crushed body... he was never expected to live. But.... in some kind of grace! Thank God. he did. I have been his caregiver & off/on our daughter also as she went through school.
We also hate hospitals (sorry to some fine doctors who we appreciate.) He also ended up in our living room ... even the hospital bed there! & the equipment! But - then again - he became the center of our universe. I always said, however, my worst care for him... is STILL better than the best in a hospital.
Wonderful... really your blog, your book (which I will read).... & your gratefulness.
I know our daughter one day observing me feeling frustrated because I could not do more...after spending the better part of 4 hours in all his regular morning ritual "routines"... oxygen, therapy, bathing, eating, pills, etc...
She said, "Isn't enough that he's bathed, & up (in 1 of his 6 wheelchairs!), & dressed... & we are all just sitting here in some relative contentment of being!!"
It really took me aback.. and I have never forgotten it. Yes, it is enough. In fact, my standard finally became... nobody died today ... it is a good day.
Out of all this - came so many projects, lifestyles, etc.. Our blog at http://ArtsandDisability.blogspot.com ..... attempting to keep up the aspects that encourage & inspire.
You really are an inspiration to be & do so much. The mind is really what moves.... and yours is leaping off pages! I look forward to reading your book.
Sonshine
Hi there,
I have a few friends (online) who have (or have had) severe M.E. and some of them have been bed-bound for some time, and I asked one of them (named Anna Biggs) if she or any of her friends could help you out. So far, the responses have been suggestions related to medical needs (they included a fleece, of which medical-grade ones are available, and a memory-foam mattress topper), but I told her that my impression was that your medical and skincare needs were being well taken care of and what I meant was coping strategies and things to do while in bed that they might think of that you might not have done.
I'm still waiting to hear back from Anna on that, but I know of a couple of websites from the M.E. community that you might find interesting or helpful. Ricky Buchanan in Australia runs a site called Four Walls, No Limits which is all about ways of making life more interesting when bedridden or housebound. Also, there is a site called Surviving Severe ME, which although it's aimed at people with said illness, contains a fair amount of stuff on surviving while bed-bound. I'm not sure how much of it will be applicable or useful to you as it's aimed at a mostly younger and mostly female audience, but I figured there must be some useful info in there for someone in your situation.
Sorry ... William (my same comment had published 3 times!)... computer / internet thing..I guess.
Sonshine
Matthew's suggestions are good--also see the link to "sitting disability" on my blog.
Matthew, Yes my skin care issues are being handled with great skill. Regardless, suggestions on skin care are appreciated. The websites you linked to are great--really helpful and important for me to read. Thank you very much
Frida, As always your suggestions and observations are spot on.
Art&s, Glad you like my blog. I too am sorry about how things have transpired. But adapt I have as we all must do i life. I keep telling myself this is a temporary set back and know it is, one that many paralyzed people have experienced.
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